Updates

October 28, 2020October 28, 2020
1st RDEB Patient Dosed With PTR-01 Protein Replacement Therapy in Phase 2 Trial

A Phase 2 trial of PTR-01 (also known as BBP-589) as a treatment for recessive dystrophic epidermolysis bullosa (RDEB) has dosed its first patient. The study, ... Read more
October 27, 2020October 28, 2020
UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front ... Read more
October 27, 2020October 23, 2020
Say Hello to This Year’s Cover Model

This month, one of my childhood dreams came true. Ever since I was 15, I secretly wanted to be a model. But because I ... Read more
October 22, 2020October 20, 2020
The Difficult Decision in Favor of a Feeding Tube, Part 1

First in a two-part series. Our son Jonah, who was born with junctional epidermolysis bullosa in 2009, struggled to eat from the beginning. It ... Read more
October 21, 2020October 21, 2020
Debra Plans Events in US, UK to Mark EB Awareness Week

The last week in October is Epidermolysis Bullosa Awareness Week, and Debra branches in both the U.S. and the U.K. have events and initiatives planned ... Read more

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January 23, 2018January 23, 2018

Factors Beyond COL7A1 Mutations May Contribute to Dystrophic EB Forms, Study Suggests

A study from Spain has raised the possibility that the development of dystrophic epidermolysis bullosa (DEB) could be attributable to additional factors besides mutations in the COL7A1 gene. Researchers reached this conclusion after studying three unrelated patients with different forms of ... Read more

Updates

1st RDEB Patient Dosed With PTR-01 Protein Replacement Therapy in Phase 2 Trial

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

Say Hello to This Year’s Cover Model

The Difficult Decision in Favor of a Feeding Tube, Part 1

Debra Plans Events in US, UK to Mark EB Awareness Week

Subscribe to our mailing list

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

Topical Anesthetic May Ease Pain of Dressing Changes With Severe EB, Trial Suggests

Interview With the Butterfly, Part 2

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

AGLE-102 for DEB Given Rare Pediatric Disease, Fast Track Status by FDA

On Going That Extra Mile

Orphan Drug Status in Europe Likely for AP103, DEB Gene Therapy

Amryt Plans Regulatory Submissions for Filsuvez Following Positive Phase 3 Data

Interview With the Butterfly, Part 1

Libtayo May Treat Advanced Skin Cancer in RDEB Patients, Case Report Shows

Donor-derived Skin Grafts Feasible Way of Treating RDEB, Trial Reports

Focusing on the Manna for Today

Same But Different Photo Contest Celebrates People With Rare Diseases

Efficacy of Cream in Control Group May Explain ESSENCE Trial Failure, Study Reports

Rethink, Accept, and Appreciate Your Unique Self

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

If You Are Struggling, Find Your Army

Most EB Patients Want to Participate in Clinical Trials but Have Concerns, Survey Finds

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

New Streaming Channel Showcases Rare Disease Films

Scientists Identify 2 New COL7A1 Gene Mutations in Chinese Girl With RDEB

Choosing Between Bad and Worse, I Learned to Become an Advocate

Pivotal Phase 3 Trial Testing Topical Gene Therapy B-VEC Now Enrolling DEB Patients

My Butterfly Baby

Report Describes Successful Treatment Combo Against Itching in EB Pruriginosa

Factors Beyond COL7A1 Mutations May Contribute to Dystrophic EB Forms, Study Suggests